Hello!

[TotallyAverage]

Hi all, got told I should introduce myself here. Type 1 diabetic for 16 years, been on a pump for 3-4. Hba1c has been between 60-67 for the past few years so I'm looking to really knuckle down and get it below 50. Will be getting the Freestyle Libre very soon so I'm hoping that will help me out.

Anyone got any advice for long-term habits to push Hba1c down? It's driving me crazy at the moment since I've been at this 16 years so I feel like I should know what I'm doing but my BGs are all over the place right now.

Also if anyone has any tips/tricks/advice about the Freestyle Libre I'd love to hear it. How is it in terms of accuracy? I've also heard it can be difficult getting the sensor to stay on the full 14 days?

Thanks 🙂

 

[trophywench]

Personally the couple I used I found stuck to me like the proverbial sh'''' to a blanket - unlike the pump cannula I stuck in this morning which I think they completely missed with the sticky machine, now got 2 ordinary plasters over it cos we don't seem to have any micropore and I know we've no masking tape, but there is a roll of 'gaffer' tape if I get desperate. Tell you what - I accidentally walked into the edge of the doorframe in our motorhome and literally ripped one straight out of/off my arm - hurt for at least 2 days.

Think it's much like everything else with diabetes - we're all different, so you'll just have to try it and see.

Now then - control generally - how long since you did a proper 24 hour basal test to see if you can identify where/when you need more/less insulin?

 

[everydayupsanddowns]

Welcome to the forum @TotallyAverage

Glad you’ve found our community. And even more glad we were recommended to you!

t1 diabetes can be a fickle adversary, and it would be so much easier if it was just ’set it and forget it’ where you could just take the ‘right’ doses and things would just work out... but our bodies are amazing and there are something like 42 factors that are recognised to affect blood glucose which all overlap and interact.

My suggestions for a diabetes reset would include...

1. Education. Get access to proper structured education regarding diabetes management. In the UK we have DAFNE which is highly thought of, but other options are available. Things that should be included (in my opinion) are:
   1. carbohydrate counting, working out how to check and change insulin:carb ratios for different times of the day
   2. SMBG technique - when to test and what to do with the results *including* basal testing to PROPERLY adjust basal on an ongoing basis
   3. correction factors - when and how to correct (with insulin or fast-acting carbs) to aim bring you back into range without jumping aboard the gluco-coaster
   4. exercise and alcohol
   5. dealing with illness
2. If structured education courses are not available in your country/area you can do a lot worse than buying 'Think like a pancreas' (Scheiner), 'Type 1 Diabetes' (Hanas) or 'Pumping Insulin' (Walsh/Roberts) which cover much the same ground. Though the benefit of peer support in group sessions should not be underestimated. Alternatively look at the free BERTIE online course.
3. Test more often AND RECORD THE RESULTS. Find some way of keeping notes daily as you go along. What you are eating, units and timing of doses (how long before... split doses...), exercise, mood, everything! Without a fairly detailed set of records I find it impossible to see what is going on. Personally I still love mySugr for this (Currently free during the pandemic)
4. Gadgets - seek out new tech that can help you manage your diabetes more easily. It might be a 0.5u pen; a smartphone tracking app, or copy of 'Carbs and Cals'; or it might be a BG meter with a bolus wizard so that you can have properly fine-tuned ratios without having to worry about keeping the maths easy. Additionally, ask your clinic about access to Insulin Pump therapy and CGM.
5. Seek peer support - join a forum or two, join Twitter, read some blogs (thanks!) or even *crazy!* join a local group and meet face to face. Living with diabetes is tough, but it's even harder if you are battling on your own. For everyone there's a little corner of the internet that can provide support, encouragement and shared experiences.

6.5% A1c target - A reply to a comment that got out of hand

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

Looks like with Libre, and joining here you have a bunch of those things in hand already!

Look forward to hearing more about how you get on 🙂

 

[everydayupsanddowns]

As for Libre and adhesion... from what I can see it’s very individual. I’ve never had a problem with a sensor sticking the full 14 days, but others just seem to find they don’t suit their skin.

I find that the adhesive takes a good 12 hours or so to reach full strength, but I’ve even had a few ‘doorframe’ incidents and the sensor has just about survived them.

If you’ve not come across them the DTN video series for using and interpreting Libre results are really useful.

Flash Glucose Monitoring | The Association of British Clinical Diabetologists

abcd.care

 

[grovesy]

Mine seems to stick ok, and I am very clumsy.

 

[SB2015]

Welcome @TotallyAverage .

Good to hear that you are getting the Libre.

The videos that @everydayupsanddowns mentioned are excellent. They are in short bursts of information of about 15 mins, and well worth watching. I certainly picked up a lot of useful advice on managing exercise.

The other things that stuck for me was the idea of flattening the profile and then bringing it down to your target level, with basal testing (fasting tests).

The other thing that I started to do once I saw the spikes after meals, was to work on timing my Bolus delivery before meals, and also adjusted portion sizes.

Out of interest I see you are using a 670G. From what you have said am I right in thinking that you are using it in manual mode?

Lots of ideas and info we have all thrown at you.
Come back with any questions that you have.

 

[TotallyAverage]

Personally the couple I used I found stuck to me like the proverbial sh'''' to a blanket - unlike the pump cannula I stuck in this morning which I think they completely missed with the sticky machine, now got 2 ordinary plasters over it cos we don't seem to have any micropore and I know we've no masking tape, but there is a roll of 'gaffer' tape if I get desperate. Tell you what - I accidentally walked into the edge of the doorframe in our motorhome and literally ripped one straight out of/off my arm - hurt for at least 2 days.

Think it's much like everything else with diabetes - we're all different, so you'll just have to try it and see.

Now then - control generally - how long since you did a proper 24 hour basal test to see if you can identify where/when you need more/less insulin?

I know exactly what you mean - I ripped a pump cannula out about a week ago after somehow getting the tubing caught on a kitchen drawer handle while I was cooking D:

I've been trying to do a proper basal test currently, since we’re in lockdown it seems like the perfect time for it, but it's such a pain to do manually (especially overnight) so I'm gonna wait until I get my Libre and then hopefully it will be much easier.

 

[TotallyAverage]

Welcome to the forum @TotallyAverage

Glad you’ve found our community. And even more glad we were recommended to you!

t1 diabetes can be a fickle adversary, and it would be so much easier if it was just ’set it and forget it’ where you could just take the ‘right’ doses and things would just work out... but our bodies are amazing and there are something like 42 factors that are recognised to affect blood glucose which all overlap and interact.

My suggestions for a diabetes reset would include...

1. Education. Get access to proper structured education regarding diabetes management. In the UK we have DAFNE which is highly thought of, but other options are available. Things that should be included (in my opinion) are:
   1. carbohydrate counting, working out how to check and change insulin:carb ratios for different times of the day
   2. SMBG technique - when to test and what to do with the results *including* basal testing to PROPERLY adjust basal on an ongoing basis
   3. correction factors - when and how to correct (with insulin or fast-acting carbs) to aim bring you back into range without jumping aboard the gluco-coaster
   4. exercise and alcohol
   5. dealing with illness
2. If structured education courses are not available in your country/area you can do a lot worse than buying 'Think like a pancreas' (Scheiner), 'Type 1 Diabetes' (Hanas) or 'Pumping Insulin' (Walsh/Roberts) which cover much the same ground. Though the benefit of peer support in group sessions should not be underestimated. Alternatively look at the free BERTIE online course.
3. Test more often AND RECORD THE RESULTS. Find some way of keeping notes daily as you go along. What you are eating, units and timing of doses (how long before... split doses...), exercise, mood, everything! Without a fairly detailed set of records I find it impossible to see what is going on. Personally I still love mySugr for this (Currently free during the pandemic)
4. Gadgets - seek out new tech that can help you manage your diabetes more easily. It might be a 0.5u pen; a smartphone tracking app, or copy of 'Carbs and Cals'; or it might be a BG meter with a bolus wizard so that you can have properly fine-tuned ratios without having to worry about keeping the maths easy. Additionally, ask your clinic about access to Insulin Pump therapy and CGM.
5. Seek peer support - join a forum or two, join Twitter, read some blogs (thanks!) or even *crazy!* join a local group and meet face to face. Living with diabetes is tough, but it's even harder if you are battling on your own. For everyone there's a little corner of the internet that can provide support, encouragement and shared experiences.

6.5% A1c target - A reply to a comment that got out of hand

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

Looks like with Libre, and joining here you have a bunch of those things in hand already!

Look forward to hearing more about how you get on 🙂

Hi @everydayupsanddowns, thank you for your reply. Yep, I often wish there was some magic “diabetes equation” that we could just plug a load of numbers into and it would tell us exactly what insulin/food we needed and when.

Thank you for all the reading/video recommendations, I will definitely go and study those. I agree with you on MySugr, I’ve been using it for a while and I love being able to see a graph of my readings, really helps put them into context. Peer support is definitely the thing I’ve been most lacking, which is mainly why I decided to join here – I fear my non-diabetic friends are getting sick of me complaining about things they have no context or advice for!

 

[TotallyAverage]

Mine seems to stick ok, and I am very clumsy.

That’s good to know, I’m also very clumsy and I was having nightmares of constantly ripping them off!

 

[TotallyAverage]

Welcome @TotallyAverage .

Good to hear that you are getting the Libre.

The videos that @everydayupsanddowns mentioned are excellent. They are in short bursts of information of about 15 mins, and well worth watching. I certainly picked up a lot of useful advice on managing exercise.

The other things that stuck for me was the idea of flattening the profile and then bringing it down to your target level, with basal testing (fasting tests).

The other thing that I started to do once I saw the spikes after meals, was to work on timing my Bolus delivery before meals, and also adjusted portion sizes.

Out of interest I see you are using a 670G. From what you have said am I right in thinking that you are using it in manual mode?

Lots of ideas and info we have all thrown at you.
Come back with any questions that you have.

Ah yes, the post-meal spikes, they are currently my biggest nightmare. I’ve read everything I can find on them, tried pre-bolusing, tried extra insulin for fat/protein, tried dual wave/extended bolus depending on the meal content, but I still can’t get it right! There’s just so much to consider and it’s hard to properly calculate things like the GI of a meal. I’m hoping to double check my basal rates once I get my Libre, and then once I’m happy with those try going back to basics with some nice simple lowish carb meals and check that my carb ratios are right, then move on to the more complex stuff.

I am using it in manual mode. I’ve heard about automatic mode but I’m assuming it only works with a CGM?

 

[SB2015]

You are right that the automode only works with CGM which is expensive if you have to self fund.

You mention that you have tried pre-bolusing. I know this made a massive difference for me. How far ahead did you go. I worked step by step on each meal, and was surprised how early I needed my insulin for breakfast. I think that that is partly dealing with the dawn phenomenon. It was a lot easier to deal with this meal as I tend to be boring and have the same every day. I then worked in other meals , but they vary so much that I am more cautious.

As you say it will be a lot easier to check things once you have your Libre. Just take things step by step and come back with any questions you have.

 

[TotallyAverage]

You are right that the automode only works with CGM which is expensive if you have to self fund.

You mention that you have tried pre-bolusing. I know this made a massive difference for me. How far ahead did you go. I worked step by step on each meal, and was surprised how early I needed my insulin for breakfast. I think that that is partly dealing with the dawn phenomenon. It was a lot easier to deal with this meal as I tend to be boring and have the same every day. I then worked in other meals , but they vary so much that I am more cautious.

As you say it will be a lot easier to check things once you have your Libre. Just take things step by step and come back with any questions you have.

I've been doing a flat 20-30mins before I start eating and then working from there. I'm trying to keep to the same breakfast and dinner every day for now as my starting point, and then having lunch as my "experiment" meal (I have my main meal at lunch since it tends to be my highest carb meal). Like you said though, it varies a lot which I am finding difficult to deal with. I know we have to make sacrifices for good control but I really hate the idea of giving up my fave high carb foods so I'm hoping with enough work I can at least make it manageable for whatever I choose to eat for my main meal.

 

[SB2015]

I was told to celebrate with a big whoop if I can get 70% of my time within target.
Once you get your Libre you will get this info. If you crack breakfast, that will be a big percentage of the day with overnight and the morning. So big whoops should be heard.

 

[Ditto]

Hello and welcome to the forum @TotallyAverage 🙂